How to raise breast cancer awareness when you can't say 'breast'

In Pakistan, a country where breast cancer kills more women than terrorist attacks, an awareness group couldn't even say the word “breast” while talking at a university about mammograms and how to check for lumps.

They had to use the euphemism “cancer of women” to discuss a disease often shrouded in social stigma in this majority Muslim nation.

One in nine women in Pakistan will face breast cancer during their life, with the country itself having the highest rate of the disease across Asia, according to the breast cancer awareness group PinkRibbon, oncologists and other aid groups.

Yet discussing it remains taboo in a conservative, Islamic culture where the word breast is associated with sexuality instead of health and many view it as immoral for women to go to the hospital for screenings or discuss it even within their family.

Now, women like breast cancer survivor and prominent Pakistani politician Fehmida Mirza and groups are trying to draw attention to the disease and break the silence surrounding it.

“There's nothing to be shy about it,” Mirza said in an interview. “No woman, no woman should die of ignorance and negligence.”

No national database tracks breast cancer statistics but people who combat the disease say it kills nearly 40,000 women every year in Pakistan. That's about the same number as in the U.S., though Pakistan only has 180 million residents to the U.S.' 313 million.

With a health care system in shambles and more young women getting the disease, breast cancer rates only are expected to get worse. World Health Organization official Shahzad Aalam in Pakistan said it was difficult to determine the exact magnitude, but that the disease is rampant.

“It is the leading cancer killer among women,” Aalam said.

Among Pakistani women there is very little knowledge about the disease. A study done at Rawalpindi General Hospital about breast cancer awareness among 600 women found nearly 70 percent totally ignorant of the disease, while 88 percent did not know about breast self-exams and 68 percent did not understand the significance of finding a lump in the breast.

“If women are being diagnosed with breast cancer, they don't even share the news with their family members,” said Omar Aftab, who heads PinkRibbon in Pakistan, which put on the university presentation where organizers couldn't even say “breast.”

“So, we're trying to break these taboos,” he said.

Another challenge is Pakistan's abysmal health care sector that is starved for money, the latest technology and drugs. Oncologist Saira Hasan at Shifa International Hospital in Islamabad said most major hospitals lack a screening center or mammogram facility. Many patients first go to a traditional healer and by the time they visit a reputable doctor, the disease is often too far advanced to treat, Hasan said.

Women in the developing world, like Pakistan, tend to die at greater rates than in more developed countries because the disease is generally detected later and health care options aren't as good.

Hasan said several factors have contributed to the rise in the disease — above all the cultural taboos.

Unlike in the U.S. where celebrities like singer Sheryl Crow or actress Christina Applegate have freely discussed their fight with breast cancer, few such public figures have come forward in Pakistan. That's changed with Mirza, though she had to delay her treatment for three months after she was diagnosed in March 2012 to handle her work, which included how to rule on whether a criminal conviction against the serving prime minister should disqualify him from politics.

“There was lot of pressure on me, work pressure,” she said. “Everybody (would) say it's an excuse I'm using to run away.”

Mirza described her friends and family being shocked by the diagnosis, as the cancer is considered by many as a death sentence. But during her diagnosis and treatment, she attended international conferences, ruled on the then-prime minister's case and later ran for re-election and won while undergoing chemotherapy.

She now uses her position in parliament to advocate for women's health issues. She plans to propose a bill making it mandatory for women to have breast cancer screenings and mammograms yearly, as well as to teach girls in schools to do breast exams themselves. She also pushed the health ministry to explain why there is no national database on breast cancer deaths.

“I think the role models will have to come forward,” Mirza said. “That is one reason I had to.”